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210.657.4968
7155 Oakridge Drive
San Antonio, Texas 78229
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THANK YOU
to everyone who has already set-up their fundraising page and / or donated to The Power of 18! With your help, we are 8% of the way to our goal of $291,600! If you haven't signed-up yet and need help with your page, please contact
office@chromosome18.org
.
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WE NEED YOUR HELP!
While everyone is staying at home to keep themselves and others healthy, Chromosome 18 is still working hard to connect families, educate medical professionals, and research treatments for our loved ones, but because of the current health crisis, large drops in funding are a reality now. Without your help, there will not be a Chromosome 18 to connect families, fund & share research, or bring you together during Annual Conferences!
The goal of
The Power of 18
! is for a lot of people to donate just a little. Together, we can make a HUGE difference! Watch a short video about the Power of 18, view Liz Woodfield's Facebook Live kicking off the Power of 18, or click "
Get started today
!" below to learn more!
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Liz Woodfield's Power of 18 Facebook Live
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- The Power of 18!
- Closer Than Ever - Chromosome 18 Virtual Conference
- Chromosome 18 Clinical Research Center Updates
- Chromosome 18 Financials
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- Coordinator Corner - Member Zoom Calls
- Chromosome Clash Victory!
- Family Stories
- Ongoing & Past Events
- Welcome New Families!
- Upcoming Events
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Closer Than Ever:
Chromosome 18 Virtual Conference
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While we wish that we could be with everyone in person this July, we want to make sure everyone stays safe and healthy. Because of this, for this year only, Chromosome 18 is excited to announce
Closer Than Ever - Chromosome 18 Virtual Conference
!
Be on the lookout for more details coming soon, but save the date for
July 13 - 18, 2020
. Speakers will present on a range of topics, and we will also have panels similar to those during the in-person conference. There will be both live & recorded sessions, and all live sessions will be recorded and posted on our website, so people that can't watch live can still participate! Once the schedule is ready, it will be shared on
www.chromosome18.org.
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We are excited to announce that we will still have an auction as part of the virtual conference! This auction will be fully online, so people from across the country can participate in the fun! Do you have a present you would like to re-gift or perhaps a new item you can't use? Consider donating it to our online auction!
Please submit donations online
here
.
All donations must be received prior to
July 9
to be include in the auction!
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We have put in place a few guidelines to help the online auction run smoothly. If you have any questions, please contact
office@chromosome18.org
.
- If you donate an item, you are responsible for shipping the item to the winner at the end of the auction. The cost of this shipment will be included as part of your donation.
- All items must be valued at $25 or higher. If you have smaller items you would like to donate, please group them with other items until the value of all items in a donation is at least $25.
- Items will be posted on an online platform, and we need pictures of the item to post. If your item does not have a picture (a trip, an experience, etc), the Chromosome 18 office can help build out a graphic for the item. We will not be able list items without a picture.
Thank you for your support! We are so excited to be able offer an online auction as part the Closer Than Ever - Chromosome 18 Virtual Conference!
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Just like during the in-person conference, Chromosome 18 will have merchandise available to purchase. Merchandise sales will open shortly before the conference and will feature both
Chromosome 18 30th Anniversary and general Chromosome 18 merchandise
. Once online ordering is available, it will be shared on
www.chromosome18.org
, social media, and in our newsletter.
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Chromosome 18 Clinical Research Center
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This month, the Chromosome 18 Clinical Research Center shared an article on
Bone Health
, which you can read in its entirety by following the link. You can view
past articles
on the Chromosome 18 website. If you have any suggestions or request for topics, please email the
Chromosome 18 Office
.
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Did you know that every month, Chromosome 18 hosts a
Facebook Live Broadcast
? These broadcasts cover a variety of topics including interviews with self-advocates, parents, and coordinators, as well as presentations from medical professionals and resource providers. Some recent topics include:
- Developing Independent Living Options
- Family Experiences
- The Power of 18
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Join us on the 18th of every month at 1800 CST (6:00 pm) for 18 minutes!
View past broadcasts
here
.
Have an idea for a Facebook Live Broadcast or interested in hosting one yourself? Contact
office@chromosome18.org
.
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You may have noticed that our budget has been reduced by $118,007 from the goal shown in April 2020. This is because much of our revenue comes from events that have been cancelled through August due to Covid-19. Our wonderful, volunteer Board of Directors has helped revise our budget with a new revenue goal of $573,218 for 2020.
Because of the isolation caused by Covid-19, our work connecting families to each other and resources is now more important than ever.
This revised budget is the bare minimum we need to raise to keep the Chromosome 18 Clinical Research Center funded, and to continue supporting the programs and resources we bring to you each month.
Consider making a
donation
or hosting a
fundraiser on Facebook
. If you are already purchasing items through Amazon, be sure to use
Amazon Smile
and select Chromosome 18 as your charity of choice! Doing spring cleaning? Consider selling items on
eBay
and donation part or all of the funds to Chromosome 18.
Don't have any extra funds to spare? Connect with families on our social media platforms to share ideas and tips for staying healthy at home, and contribute to the discussions happening on our pages. We are working hard to create and provide new resources for our families, but we cannot do it without your help!
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During this crazy time when we cannot host in-person events, the Chromosome 18 staff and our volunteer coordinators have been trying new things to help our families stay connected. On April 30
th
, Mid-Atlantic Regional Coordinator, Mike Fudala, Program Service Coordinator Michelle Dvorak, and I hosted the first Mid-Atlantic Region Zoom call. We had about 8 families, one brand spanking new, who joined this first call. It was great to see familiar faces and meet new ones!
Aside from the opportunity to meet new families and chat with friends, we did have some informational aspects to the call as well. Michelle was able to highlight all the amazing updates and resources that staff and volunteers have been working hard on for our families. I am sure Michelle felt like many elementary teachers who host Zoom calls with their class. Trying to share while we are all just excited to see one another, waving, making faces, showing our pets, etc. It made for a dynamic and fun atmosphere in which everyone was involved!
After our initial call, we have hosted several more region and syndrome calls. The calls seem to be growing in excitement and numbers. You will get an email about when your regional and syndrome calls are scheduled a week in advance, and the
Chromosome 18 Facebook Page
also highlights these dates.
Upcoming May & June Zoom Calls
:
Southeast Regional Call, May 31 @ 7:00 pm CST
Great Plains Regional Calls, June 10 @ 7:00 pm CST
18p- Syndrome Call, June 17 @ 7:00 pm CST
After we get through all of our regions/syndromes, we want to plan for a second round. This is where we would value your input and participation. If you have joined a call, what did you think? What could we do different to support you and your affected family member? If you haven’t joined, but knew about them, what held you back? And of course, what did you LOVE about the call? Please let
Katie Bailey
know.
Times are crazy now, but together we can learn and move forward in helping each other.
Katie Bailey
VP for Member Relations
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Chromosome 18 Chromosome Clash
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Leading up to May 18, Chromosome 18 participated in the Chromosome Clash hosted by the American Society of Human Genetics. With your help, Chromosome 18 was able to bring home the win! We survived some difficult rounds, including matches against chromosome 21 and chromosome X.
Thank you to everyone who took time to participate, vote, and share! With your help, Chromosome 18's mission was shared with the American Society of Human Genetics' 38,000 followers helping raise awareness for chromosome 18 conditions and the work we do at Chromosome 18 Registry & Research Society and the Chromosome 18 Clinical Research Center!
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Calling all Chromosome 18 Families to share your story! We are looking for families to share their experiences with chromosome 18 conditions in a short 1-2 minute video, a quote about what Chromosome 18 means to you, or a short written story!
Sharing your family's story is one of the most powerful things you can do to connect with other Chromosome 18 families. When new families are diagnosed, after reading through syndrome descriptions and medical information, many want to hear from another family about what their experience has been like.
If you are comfortable, we would love to have a short video of you sharing your story. If you are not comfortable sharing a video story, we would also love to feature written stories with pictures of you and your family on our website and social media. You can view current family stories on our
website
under "Our Families."
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Thank You and Happy Birthday to
Brandi Maes, Daniela Alvarez, Denise Jackson, Jessica Verhulst, Katie Bentley, Lorna Feijoo, Paul Stevenson, Susan Alexis Nascimento, and Teresa Zimmerman
for celebrating their birthdays with Chromosome 18 by donating their special day on Facebook,
raising funds and spreading the word about our great organization
. If we missed your fundraiser, please contact
office@chromosome18.org
to let us know!
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Did you miss our May Facebook Live Event? We featured
Liz Woodfield discussing the Power of 18!
View this fun broadcast
here
.
Be sure to tune in to the
June Facebook Live Event
, June 18th at 1800 (6:00 p.m. CST) -
hosted by Dr. Sid Atkinson
!
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Welcome to the Chromosome 18 Family!
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We are delighted to welcome the following families to Chromosome 18.
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Cruez Family, Great Lakes
Venn Family, United Kingdom, 18q-
Meling Family, Great Lakes, 18q-
Mast Family, Northwest, 18q-
Evans Family, Mid-Atlantic, 18q-
Steepe Family, Australia, Tetrasomy 18p
Tatai Family, Germany, 18q-
Fields Family, Mid-Atlantic
Fischer Family, Denmark, 18q-
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Bostrom Family, Sweden
Daniels Family, Southwest
Hughes Family, Texas Area
Luna Family, Southwest, 18q-
Connor Family, Texas Area, Pitt Hopkins
Hillman-Healey, Canada, Pitt Hopkins
Johns Family, United Kingdom
Albert Family, Southeast, 18q-
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Upcoming Calendar Events
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Do you have questions, or would you like more information about something in this newsletter? Contact
office@chromosome18.org
for more information
.
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